SEIZURES

[parentofchiari]

DOES ANY ONE HAVE AN ANSWER?  DOCTORS DONT SEEM TO KNOW.
MY GIRLS WHO HAVE NOW TURNED 14 HAD THE DECOMPRESSION SURGERY IN MAY 2010. WE WERE HOPING THAT WHAT SEEMED TO BE DROPS AND ARE NOW SEIZURES WOULD BE CURED AFTER THE SURGERY HAS ANYONE EXPERIENCED THIS

[blondeballerina07]

Hi,

I also has seizures and drop attacks prior to surgery. After surgery my drop attacks persisted, but it seemed like the seizures may have subsided until Friday when I had my first one again. May I ask when your daughters came back? I am currently in the hospital and they are looking for what is causing them/waiting to see if another occurs to see if it is because of a lack of oxygen like prior to surgery, so for now it is waiting game. If I get any other diagnosis than epilepsy I will update you and you can maybe look into it.

[selmaS]

Hi...I am so sorry to hear ur DD's r still having many of the pre surgical symptoms and issues post op.

We do have a list of drs on here, and suggest u research all drs to find the right one for  u and ur DD's....U may need to call first to see which will see children as many on our list do not specify.

Please keep us posted on the girls progress as well as ur search for another dr.
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
"selma"

[n40066]

there were a few chiari specialist used by other members here on this forum...here is the list
Dr.Victor Kareh, MD
Neurosurgery, Spine Surgery
21216 Northwest Freeway
Suite 230
Cypress, TX 77429
281-640-2121

Gulf Coast Brain & Spine Institue
Dr. Peter J. Yeh, MD, FACS
Board Certified Neurological Surgeon
6565 West Loop South, Ste. 450
Houston, TX  77401
713.661.8900
713.661.5535 fax


Dr. Kim
Dr. Chen
Misher Neuroscience Institute
6410 Fannin St
Houston TX 77030
713-704-7100

these are the ones listed here for texas......a little closer than ny!  but please do research any dr you choose and make sure they are a good fit for you and the girls!  i have personally never heard of their dr....is he a chiari specialist?

[parentofchiari]

Dr DavidJimenez out of San Antonio Texas, Head of neurosurgery for ut health science center, did the decompression surgery to both, he seems to think that the chiari is not playing a part in their seizure activity. their neurologist  on the other hand think that the chiari was not a factor and the were both just having seizures. Of course my wife and i are very frustrated with these doctors cause neither one of them want to consider where they are coming from . Now their primary physician who is great is going to keep pushing for another chiari specialist some where around the san antonio texas area we are considering going to new york to the chiari institute  

[n40066]

i'm so very sorry to hear about your daughters!  that is awful for all of you...unfortunately, many people with chiari do have this problem after being decompressed. there are no gaurantees with the surgery and no way to tell in advance if we will be better.  but it is our only option to stop the progression of damage to our bodies.  what does the girls ns have to say?  are they on meds now for this?  just out of curiosity, was their ns a chiari specialist?
i hope you find the answers you're looking for ...
elizabeth

[parentofchiari]

Thing is they were having the seizures before the decompression surgery and i was hoping or should i say we were all hoping they would go away . wish full thinking. one of the twins were classified as having epilepsy. i hope all is well with you and thank you for your response

[timelordess]

Hi,
I don't know if this is help, or not. I used to get drop attacks. After having my decompression in March 2010, I was fine for about 4 weeks, and then out of nowhere, I developed seizures. I am now classed as epileptic and have to take AED's all the time.
I know it's not really useful or good in any way, but it is what happened to me.  I have Toni Clonic seizures and Partial Complex one's.
Hope you do get an answer.
Love Emma xx